The story of Angela Morales, born March 24 with a neural tube disorder called anencephaly, has gained international attention through Facebook as her parents fight for her survival.

By KAREN LEE ZINER

PROVIDENCE, R.I. — Monday marked the 36th unexpected day of life for infant Angela Morales, born March 24 with anencephaly, a neural tube disorder that results in the absence of a major portion of the brain, skull and scalp.

Infants with this condition often die within minutes or hours; to live for weeks is uncommon, according to medical experts.

Sonia and Rony Morales say their baby’s survival is a blessing from God, and they are praying for a miracle — that her brain and skull will grow. They are also seeking surgery to close the gap on the back of her head to prevent infection.

They recognize their infant is likely to die but are “waiting for God’s will.”

Meanwhile, they are telling their baby’s story on a Facebook page, “Our Baby Angela and our Journey with Anencephaly.” And people from across the world are responding.

Sonia Morales created the page — www.facebook.com/OurBabyANGELA — to educate people about the condition, to help other parents who face the same prenatal diagnosis and to underscore their opposition to abortion.

Congratulations and prayers have come from Australia, Italy, Switzerland and Poland. Chile, El Salvador, Costa Rica, Bolivia. Peru, the Philippines and Guatemala — where the couple are from. Nevada, California, New Hampshire. Florida, Texas, Kansas and throughout Rhode Island.

Crocheted caps and dresses continue to arrive in the mail — from California, Kansas, Missouri.

“We believe God has a plan. He showed us our mission was to defend life,” Sonia Morales said. “Abortion will never be an option for us.” Because of Angela, she said, “We appreciate life more than before. It is pure love.” She adds, “God is the only one who can take a life away.”

Sonia Morales, an Avon saleswoman, and Rony Morales, who has worked as a cook, are parishioners at Our Lady of Mt. Carmel Church on Federal Hill. They have a 4-year-old daughter, Elizabeth.

Last July, an ultrasound taken at Women & Infants Hospital at 16 weeks showed the unborn child had anencephaly.

Dr. James F. Padbury, pediatrician-in-chief at Women & Infants, said anencephaly is “the result of failure of neural tube closure at the upper end of the process. Most of what people think of as the brain — which is cortical tissue — is missing. There’s a variable degree of involvement of the brain stem and other vital structures.”

The missing portions usually include those that control thinking and coordination.

Most children born with anencephaly die “within hours or days. Rarely some survive for weeks,” he said.

Carrying the unborn child to term “is actually the more common choice among families,” said Padbury. “We support that. We have hospital systems that cooperate to provide comfort and care to these children, nutrition and warmth.” But, he added, “Sophisticated medical interventions are not appropriate, period.”

According to the Centers for Disease Control, almost all babies born with anencephaly will die shortly after birth. The CDC estimates that each year, about 1 in every 4,859 babies in the United States will be born with anencephaly.

During an interview at the family’s home last week, Rony Morales recalled learning of their unborn child’s condition.

“We were crying and we were asking God, why is this happening to us?” he said.

Ultimately, the couple turned to their faith.

Sonia Morales created her Facebook page on Jan. 18. She posted ultrasound pictures and apprised people of the pending birth.

“When we started telling people that we wanted to carry the baby full term, people I know asked, ‘Why are you doing this?’”

She said, “I have met many people going through this” through Facebook. “They are not as strong … they are depressed. It’s like therapy for me. I can help them.”

Angela Morales was born on March 23 and went directly home from the hospital. “She eats well, she burps, she smiles, she cries … ,” her mother said. The family has been told those are reflexive actions.

For four weeks, a hospice nurse came once a week and took the baby’s vital signs and brought dressings for her open skull. As her condition remained stable, she was discharged from hospice care last week.

“She is surviving. She is defying the odds,” Sonia Morales said. “For us, she’s a human being and she’s living — even if she has a terminal condition.”

Sonia Morales said Bishop Thomas J. Tobin of the Diocese of Providence blessed the unborn child during an annual respect for life Mass. The bishop visited the family at their home on April 11, blessed the baby and brought a relic of Mother Teresa of Calcutta.

The Diocesan Office of Life and Family Ministry has been involved with the family since last October, offering counseling, material support, meals and prayers.

Sonia Morales said surgery is planned for May 6 to close the back of the baby’s head, to reduce the risk of infection. But the procedure in itself “is a big risk,” she said. “She might die there. We chose the surgery because we don’t want her to be dying because of an infection.

“We have prayed over this, and that’s our answer; that the surgery will be helping her. I think with the surgery we’re going to give her a better quality of life. If she goes, that’s God’s will also. We already gave her what we were supposed to give her,” she said.

“For us right now, it’s to let people know — don’t kill these babies. Even if she’s unconscious, she still has a heart, she has a soul. We believe we are communicating [with her], soul to soul.”